CCG IFR timeline

[MarkW3194]

I have finally been put forward for Medtronic CGM funding by my diabetes consultant.

Does anybody have any idea of how long IFR’s take to be processed? I know things are likely to be delayed at the moment but just anybody’s experience? My CCG’s website says around a 2-4weeks, but I know from past experience that the timelines listed there are often completely fictional.

I don’t have a lot of confidence I will be approved for funding (my CCG are known for being strict) but it’s been nearly two months now and I just want to know either way!

 

[Rokaab]

I've been going through something similar, though my CCG does MDT meetings to discuss funding instead of IFR's - don't know if the time scales would be similar though

So far:
1. My consultant agreed that the sensors would be helpful for me (I finally got started on my pump in July) on the 1st day of October
2. The October MDT meeting was then missed (my case should have been discussed then), so I was told I'd have to wait til the November one (at one point I was told its supposed to be in the middle of the month, another point I was told it's at the end of the month)
3. End of November (11 days ago), nothing, rang up my hospital to get an update - they told me they'd ring me back, they never did.
4. On Friday (4 days ago) I got a letter (electronically) that says 'We have agreed to apply for NHS funding for Guardian sensor', I think this means its a yes, but its worded a bit oddly, anyways, I have to wait for the admin team to sort that out
5. Now, sit on my hands an wait and hope that that sentence did mean yes

So for me its taken 2 months (and a bit) so far and I think I'm approved.
Given how long its taken my hospital team to do things before, not sure when I'll get said sensors (if its a yes)

 

[MeiChanski]

Hello,

I think with COVID and what not, it might add more time to get the things we need from our hospitals, taking into consideration we all live in different areas.

My case was before COVID, I did DAFNE some time in November(towards the end of November), I think 2 weeks before the course finished. My nurse who was leading the course said she’ll speak to my consultant to discuss CGM funding. I got my Dexcom fitted on 24th December 2019, early Christmas present to myself. I waited around less than 4 weeks. This led onto receiving my pump on 12th January 2020, I received the CGM training on 24th January 2020

 

[MarkW3194]

I've been going through something similar, though my CCG does MDT meetings to discuss funding instead of IFR's - don't know if the time scales would be similar though

So far:
1. My consultant agreed that the sensors would be helpful for me (I finally got started on my pump in July) on the 1st day of October
2. The October MDT meeting was then missed (my case should have been discussed then), so I was told I'd have to wait til the November one (at one point I was told its supposed to be in the middle of the month, another point I was told it's at the end of the month)
3. End of November (11 days ago), nothing, rang up my hospital to get an update - they told me they'd ring me back, they never did.
4. On Friday (4 days ago) I got a letter (electronically) that says 'We have agreed to apply for NHS funding for Guardian sensor', I think this means its a yes, but its worded a bit oddly, anyways, I have to wait for the admin team to sort that out
5. Now, sit on my hands an wait and hope that that sentence did mean yes

So for me its taken 2 months (and a bit) so far and I think I'm approved.
Given how long its taken my hospital team to do things before, not sure when I'll get said sensors (if its a yes)

If your CCG operates anything like most I’ve experienced do then it sounds like you’re just starting the IFR stage ‘We have agreed to apply for NHS funding for Guardian sensor'.

The MDT within your hospital meets to agree if they feel you meet the criteria then they apply to your CCG for NHS funding on your behalf.
It’s the CCG who decide if you get the funding or not the MDT just decide if they feel like you are likely to be approved - of course your CCG could be totally different...

The MDT happened back in October for me which is when they applied to my CCG for funding, not heard anything from my CCG yet, hopefully yours is faster! It sounds like at least they keep you informed

Hopefully you get approved soon, I got the choice of g6 or guardian 3 and decided to go with the guardian since it links to our pumps and even though they’re not as reliable as dexcom at least the pump features like PLGS will be useable.

Hopefully you hear back soon.

 

[Hopeful34]

I was fully supported by my MDT to get cgm, but when they applied to the CCG, they turned it down. Finally got Libre, which was bizarre really as the main reason I needed it was overnight hypo's which I didn't wake up from till hours after. Miaomiao has helped a lot though.

 

[Seacrow]

Good grief. Another example of CCGs varying wildly. My consultant asked me if I thought my GP would prescribe the Libre, I said probably. A week later I passed the diabetes nurse at the surgery and enquired if the request had got through yet, yes, and if I had half an hour now she could set me up.

Under a week. As far as I am aware, one letter from consultant to GP. Applying to MDT and CCGs for special funding? Didn't happen. The consultant may well have discussed my data with other doctors, but I'm not aware of any approval being needed.

I'm beginning to wonder if I'm living a charmed life when it comes to the bureaucracy (long may it continue).

Do we have a list or consensus on which CCGs are particularly 'tick all the boxes', and which are a bit less bureaucratic?

 

[MarkW3194]

Good grief. Another example of CCGs varying wildly. My consultant asked me if I thought my GP would prescribe the Libre, I said probably. A week later I passed the diabetes nurse at the surgery and enquired if the request had got through yet, yes, and if I had half an hour now she could set me up.

Under a week. As far as I am aware, one letter from consultant to GP. Applying to MDT and CCGs for special funding? Didn't happen. The consultant may well have discussed my data with other doctors, but I'm not aware of any approval being needed.

I'm beginning to wonder if I'm living a charmed life when it comes to the bureaucracy (long may it continue).

Do we have a list or consensus on which CCGs are particularly 'tick all the boxes', and which are a bit less bureaucratic?

There’s a different funding arrangement for flash monitoring (libre) - the GP funds them directly on an FP10 as long as you have consultant approval and meet certain criteria, so you don’t need to have CCG approval - CGM’s aren’t routinely prescribed so you need to do an IFR to get funding.

Unfortunately I have never got good results from libre, I self funded it on and off for 3 years but it was almost never accurate especially when low and I also really need the alarms, I have no hypo awareness.

 

[MarkW3194]

I was fully supported by my MDT to get cgm, but when they applied to the CCG, they turned it down. Finally got Libre, which was bizarre really as the main reason I needed it was overnight hypo's which I didn't wake up from till hours after. Miaomiao has helped a lot though.

This is my suspicion of what might be happening, my consultant(s) have been really supportive but I know from prior experience that my CCG are very unwilling to fund diabetes tech. They also don’t let the patient know the outcome of IFR’s expecting the consultant to, but the consultants don’t because in their area (different CCG) the IFR panel write to the patient.

If the consultant says you need it there really shouldn’t be any question over funding, clearly they know your situation best!!

Joined up thinking has never been an NHS strongpoint!

 

[Rokaab]

If your CCG operates anything like most I’ve experienced do then it sounds like you’re just starting the IFR stage ‘We have agreed to apply for NHS funding for Guardian sensor'.

The MDT within your hospital meets to agree if they feel you meet the criteria then they apply to your CCG for NHS funding on your behalf.
It’s the CCG who decide if you get the funding or not the MDT just decide if they feel like you are likely to be approved - of course your CCG could be totally different...

The MDT happened back in October for me which is when they applied to my CCG for funding, not heard anything from my CCG yet, hopefully yours is faster! It sounds like at least they keep you informed

Just as a quick update, I think my hospital/CCG does MDT's instead of IFR's (what the MDT stands for in this case I do not know) - I think they did mention this in October to me, because having gotten that email letter last Friday I've now received an email from the diabetes nurses at my hospital saying they're sending Medtronic a message to allow me to order them and they wanted to know when I'll be free for training - though when this will happen is unknown - depends when the lovely trainer from Medtronic I had last time is free to do this (she was actually really helpful and helped far more than the diabetes nurses at my hospital).

So for me its taken exactly 10 weeks today to get to this point (from the consultant agreeing to see if he could get them funded) - but yeah when I actually get to start is another question entirely.

I hope yours gets sorted out sooner rather than later as well MarkW3194

 

[Seacrow]

Unfortunately I have never got good results from libre, I self funded it on and off for 3 years but it was almost never accurate especially when low and I also really need the alarms, I have no hypo awareness.

So, it's kind of ironic that the Libre2 (available on the same basis as the Libre from Nov 14) does the trends and the going low hypo alarms?

I've recently lost any hypo awareness above about 3, by which point I'm mentally impaired. Really looking forward to the 2.

(By mentally impaired, frex, I woke up middle of the night, soaking wet from sweat. Tested bg - 2.2. So I went and had a shower. Luckily the OH wondered what I was doing and brought the Lucozade to me in the shower.)